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Social Skills » Blogging AS an Aspie
Matt has Asperger’s Syndrome (AS), an Autism Spectrum Disorder (ASD) and is writing this blog so that people can gain more of an insight into how people with the condition process thoughts, feel emotions, react to situations and generally handle life.

20 Oct 08 Choosing to stay sober

I was at an 18th birthday party on Saturday night, and surprised both myself and everybody who knows me by staying sober for the whole night. But why did I choose to do so?

A few reasons, some background, but one main one. Firstly, I worked an outdoor bank holiday event in August, where alcohol was flowing freely; and despite working and not drinking any of it; I really had a good time. At this event, I also learnt a lot about what can go wrong, and how stupid people really can be when it comes to consuming alcohol.

Secondly, the last 18th birthday party I went to didn’t quite go very well, and I almost ended up in serious trouble. Oops. I thought it might be best not to end up making the same mistakes. You know, as in ‘let’s prove I can actually be responsible’ type of thinking!

But the main reason had more to do with whose party I was at. You see, I have a tremendous amount of respect for my friend, and I also like her, as in really like her. Therefore, I didn’t want to put myself in the position where I’d do something stupid that I’d regret around her. I don’t know why, but she is the one girl who I really like, but somehow always seem to get things right whenever I’m with her.

For some reason, I seem to change my personality, and the flirtiness calms down. Weird, I know, especially considering that she’s currently single! I never think of doing anything other than hugging her, or simply being with her. Which unfortunately means I wasn’t quite expecting her reaction when she saw the necklace I bought her; she came at me, I expected her to hug me, and she tried to kiss me. Oops. Not the usual me – if it wasn’t her, I’d have most likely been the one initiating the kiss…

Also at this party, was her ex-boyfriend, who she’s said she does not ever want to go back out with, “too many times” being her favoured saying! Firstly, I figured my friend would be getting rather drunk and might just appreciate waking up and not regretting anything. Secondly, I’d had one conversation with him before, and didn’t want a similar one if I was drunk, I doubt if I could handle it well.

So, I stayed sober. Apart from her younger brother, I was the only sober person at the party. And it’s a good thing I’m a first aider, because 2 people passed out with drink, and 3 more were vomiting. Lovely. It does make me wonder why people let themselves get into that kind of state. I was also able to help my friend when she wanted 5 minutes alone in her room and her other friends were thinking it was best to sit with her. One simple, but semi-polite request later, my friend had the space she was asking for.

I really enjoyed the night, and thank my friend for inviting me. For once, I can walk away in the knowledge that I hadn’t done anything wrong at all!

29 Aug 08 The reflection

I have a lot of regrets about “Stop”. Thinking back over the night, which at times it is hard not to, brings a tear to my eye. But I don’t know why it does so, because there are so many ups and downs to do with that one night.

I’m sure it was on my way down to the post with the team that one of the cute red bull girls told me she had lost my number and wanted it again. I think it was at that point I first noticed Steph. Against my personality, regret number one was giving my number to the red bull girl. The reason for this is that I was partially thinking about her for the next 5 minutes, and how I was going to get my number to her. I recall telling the red bull girl that I had to go, but I would give her it later – little knowing I wouldn’t see her again.

I then approached Steph (though at this point, I was unaware of her name), and asked if we could help her. She told us that this was normal for her and that after taking her medication she would be alright. I relayed this to Becca, who told me to do the refusal form. Regret number two was not trying to persuade her at this point to go to the treatment area where it would be quieter. I also regret not sitting down next to her, simply staying put and making sure she was actually ok.

When filling in the refusal form, Steph was unco-operative, and it took quite a deal of persistence to get her to sign the form. My fourth regret is actually being so persistent, as I don’t think it helped her condition. Contrarily, my fifth regret is in not using that opportunity to attempt again to persuade her into letting us treat her.

My sixth regret may well class as unavoidable – letting her out of my direct line of sight. In my defence, we were called to two shouts one after the other outside of the control building. But all the same, looking back, I’d been happier if I knew somebody had been keeping an eye, just to be sure Steph was getting better.

The next regret is in the way I approached the incident when the police called us directly over to it. I think because of the routine I’d been getting myself into all night, I went straight for the paperwork. It took Ryan to shout at me “100% o2 now, non re-breath!” to get me to even think about putting the resus bag down and getting the cylinder ready. After the incident passed, he did apologise to me, but I told him that he needn’t have apologised, it was an incident, and I wasn’t giving it my full attention.

The eighth regret comes in the way I spoke to her friends in getting Steph’s details – I was rather forceful, and quite demanding. I think I was also impolite. In my mind, I was doing this to ensure that I didn’t get met with the refusal from above. But I think, with hindsight, I could have been a damn sight more polite that I was.

I wish I hadn’t been so sharp with the police. They were doing a fantastic job, and were a brilliant help. In fact, they probably could have got a message to medical control faster than me. Even if they did ask for the ambulances, the location would have been enough for Steve to look out of the window and realise what was needed. I never had the opportunity to apologise to the officers, my tenth regret in not seeking them out to do so.

Kneeling next to Steph, and effectively forgetting her friends looking on is also regretted; I was the only medic available who could have provided some much needed reassurance. Because they were so thankful for our help, I didn’t even think to apologise for not keeping them up-to-speed with what the crew was doing.

I regret not asking somebody to site with Becca, and effectively leaving her along crying. I didn’t know why she was crying, but I should have been thinking ‘she needs to talk to somebody’. Why didn’t I?

Regret 13 is the way I spoke to Emily. I was way too harsh, and thinking solely of my team-mate. I should have stopped and looked at it from her angle, if I did, I would have been able to offer a suggestion. Instead it took my boss to appease the situation and suggest a new plan to keep the cover levels up.

Regret 14 is my thoughts as I sat down – ‘I need a red bull, why didn’t I stash one?’ The 15th regret is that my mind jumped immediately to the cute red bull girl, and the fact that she didn’t have my number. Why did I think about that? Also, I think because I thought of her immediately after the incident, I couldn’t help but notice that she wasn’t around for the rest of the time I was at the event.

29 Aug 08 Stop

All names changed to protect patient confidentiality and to anonymise the incident. Posted to this blog to help others understand what went through my mind.

“Come on Steph, not far now.” “Steph, stay with me girl, please, you’ll be ok soon enough.” “Steph, are you with me?” “Steph?” “STOP!” All eyes turned to me as the carry chair was brought to an abrupt halt; “She’s unconscious!” is all I needed to say to confirm everybody’s initial thoughts.

I dropped the oxygen bottle and bent down to assist, Ryan told the police officers to hold then move the carry chair on command as he and Becca, our nurse, went to grab Steph, whose airway needed protection.

Then everything happened at once, and of the medics, I was the only one with ‘nothing to do’. Becca had gone to Steph’s head to open her airway and change the masks; Ryan was waiting for her ‘go’ for the compressions. A policewoman was calling an ambulance – “Cancel that call” – last thing I needed was a 999 ambulance turning up without going via our controller first. A policeman was calling for CCTV cover on us – although it would have been easier to get Control to lean out of the window; it was right above us!

A second policeman was about to hit his radio for an ambulance – “Don’t even think about it. I need to run this via medic control.” Looking back, there were many better ways to say what I did to the police, but at the time, my mind was focussed on finding out what we needed for Steph, and getting it back to our controller. I simply didn’t engage the part of my brain that deals with the social niceties and etiquette. The shock of the incident had shut it down, to allow the protocols to take over – rigidly take over.

Hang on, Becca and Ryan had our team radios; how do I get backup? “Ryan, what do you need? Para backup? Stretcher?” “Yes, yes, now!” “Ambulance – no?” “No.” “Becca, want me to ring medic control from my mobile?” I asked because I had set one of my speed dials to be medic control in case of radio failure, and neither Becca nor Ryan had a free hand to work a radio.

I can’t remember the exact call, I blurted something like, “This is Matt with medics 18 and 24 with a patient outside of event control. I need a paramedic backup and a stretcher immediately please.” I was asked to repeat it, because I was talking too fast, and I also remember hearing the controller say “Stand-by, on phone to crew.” I was still kneeling down, and all of the police were providing a human cordon from the crowds to give us working space. I held the paperwork in my hand, knowing I should be writing something, but I think I froze due to the shock of having a patient collapse on me for the first time.

I don’t know how long passed, but it must have been a short time, but Steve turned up. I asked him, “Want me to keep the line to control?” He answered, “This phone? I hung up 2 minutes ago.” I suddenly realised that Steve was our controller for the weekend. I think Steve was watching for the backup crew to arrive. I suddenly remembered that there was a patient in front of me, who was now half-sitting, leaning back on Becca’s knee. She was drifting in-and-out of consciousness, and I put plenty of effort into trying to keep her with us.

“Steph, come on, it’s Matt, stay awake for me, girl.” “Steph, you’re doing really well, keep focussing on your breathing for me.” “Come on, Steph, don’t go to sleep on me, I need you to really try and keep your eyes open.” “Steph, come on, look at me, that’s a good girl.” I basically kept repeating those lines, and kept her looking at my eyes, I would at least then know if she was with us. My entire attention was with Steph, I didn’t even know what Ryan or Becca was doing at this point.

The backup crew arrived, Emily and Tom. I stood up to give them room, and gave as much handover as possible to Emily, aiming to be as concise as I could. As I finished, I noticed Steph’s friends, who I hadn’t spoken to since her collapse, were in tears at what they could see. Although I knew I had been quite harsh with them in getting Steph’s details from them, I think I may have been the only medic available to talk to them. I held my hand out; she instantly grabbed it and looked to me for reassurance. “She’s going to be ok, she’s came round, and we’re just moving her up the road to our base where we can look after her easier.”

As she was loaded onto the stretcher, her friend asked if she could accompany her, “Of course you can, just give me a moment, I’ll stick with you.” I bent down to gather all of the kit that wasn’t with Steph, and went back to her friend, who again grabbed my (now rather full) hand. “Can I hold her hand?” “Yes, you can, but just give us 2 minutes to get her into our treatment area and off the streets.” “Thanks.”

As we arrived back at base, I handed over the paperwork (both sets) and walked round the back. Emily asked if I could get the team back out to post, as the medics were low on cover. “Hang on, we need a good 5.” As I walked into our refs area, I noticed Becca was crying – and it was seeing her that brought my social skills back into play – “Are you ok?” “I’ll be fine, just give me a minute.” “Ok, would you like a cuppa or anything?” “No.” I left her, because I didn’t know her personally, and there was plenty of crew on base that did.

I was also in shock myself. Steph was the first patient I was treating to collapse on me. But, it wasn’t that which was bothering me. I felt a massive amount of guilt, sadness, and uselessness – just 30 minutes before the collapse, we had come across Steph who was having a minor incident, and we offered our help. She refused, and it took me ages to get her to sign our refusal form. I tried hard, but I didn’t get any of her details, medical or otherwise. Her friends were just as unhelpful, and I know I was quite persistent with them. I documented the refusal to give details, and made as many observations as I could, following Becca’s advice, “Write as much as you see, in case she self-presents to base later tonight.”

I wish she had presented to base. I wish I had been more persuasive. I felt really bad, because in the 30 minutes or so we’d been away from her, she was getting worse. We all knew that the reason for the collapse was directly related to what we had predicted when she refused treatment. There is only so much we can do as medics, but that statement is of little consolation. 6 days on, I still feel bad about seeing what Steph went through, and for not trying to do more when she was refusing.

For information, Steph did recover from the reason she collapsed.
Please see the next post – The reflection – for my regrets in my personal dealing with this incident.

17 Aug 08 a friend like henry

I’ve just finished reading a friend like henry by Nuala Gardner, which is about Dale, her son, who has been diagnosed with classical (Kanner) autism. It’s about her fight to achieve the correct diagnosis, to get the support he is entitled to, and about his remarkable journey to a full integration into society. A TV drama, After Thomas, is also based on her story, but that’s a separate post due to my differing views on the film.

I almost cried at a few points in the book, particularly when the dog dies in the final chapter. But it was the afterword that actually had me with tears coming out of my eyes. Two quotes from the penultimate part of the book strike a lot of meaning with respect to my knowledge and experience of autism/Aspergers:

If I had to say just one thing about autism as a disability, it is this: we must never underestimate how hard a person affected has to work every day, all day, to live by our society’s rules and to fit in. The anxiety and effort this takes is always immense, and, like their autism, it is for the rest of their life.

It sounds very similar to the words of my Step-Dad a few years ago, and it truly sums up how I live my life. Each day you may see me as a ‘normal’ student at college, chatting, flirting, swearing, getting on with the work, and having a laugh. To do everything except the work itself, it requires a massive effort, whereas by comparison the academic work is as easy as you’re finding the small talk.

You worry about passing the exams, doing well in the subject, and coming home with your anticipated grade – be that an A or a U. I worry about whether I will mess up and be labelled as a freak, whether I will appear ‘normal’, whether I will end up a total loner with no friends. Yes, you may worry about whether you will ‘fit in’, but to do this may require an hour or so in the morning sorting out your hair and make-up. I have to worry all day every day about how I am seen, what I am saying, how people are reacting, and most importantly, whether I am interpreting any of that correctly!

Through the drama After Thomas and this book, Dale and I hope that at long last some lessons will be learned.

That one simple sentence made me reflect on everything I have been through recently, particularly since starting at this current service provider. My Mum’s fight for my diagnosis and the subsequent fights for adequate provision were all too similar by my recall. I was diagnosed about 7 or 8 years after Dale was, and I can’t say that much has changed. Departments within services are still trying to pass files and the accompanying responsibility around, with nobody quite certain where Aspergers ‘fits’. Multi-Agency teams cannot agree on who should be doing what, and none of them are keeping the important people in the loop.

With my forthcoming transition to the ‘real world’ as it were, I have been thinking on what is out there, how good it is, and is it really worth it? Currently, I describe myself as being “in this cotton-wool padded world, with far too many walls layering me from the real world, it’s going to come all to soon when those walls crumble and I’m the only thing left standing.” My point behind this is that with the current culture in healthcare provision, all too often the actual purpose for providing me with these services gets lost, “in less than a year’s time, it’s likely that I will have to do this anyway.”

To prove that I can cope independently requires being given limited amounts of responsibility, but in this day and age, somebody always has to be responsible for my care, and most of those somebodies are governed by ‘risk management…

29 Jun 08 I’d never guess

I’m away at the minute, on ‘the circuit’ as its called, which means that I’m visiting a few different university open days over a short period of time (the ‘summer season’ of open days, as they get called). Now that’s not a bad thing, I really enjoy being away and being able to travel independently.

But, that’s not what this blog post is about. It’s about a night I had in a pub/restaurant next to the no-frills hotel that I stayed in on Friday night. As I’m on my own, it can get a bit boring, particularly after I’ve eaten and want to have a few more drinks. The good thing, however, is that the bar staff on duty were really friendly, fun-loving people.

As usual, I ended up flirting with one of the beautiful 18 year old lasses, and I must have taken up the last hour or so of her shift just talking generally and about us. Needless to say, I started off a bit drunk, but once I got talking properly, I thought that it would be better to start sobering up, I didn’t want to come across as some sleazy drunk trying it on; she had enough lads that had already tried.

We talked about being a student, where is good in the local city, what we like doing, and so on. And somehow, I ended up mentioning that I had Asperger’s Syndrome. Then, she shocked me: here was a stunning blonde, blue-eyed girl, only 18, with a clue about what Asperger’s Syndrome actually was. She didn’t say it, but her facial expression told me enough. As I asked her more, her first comment was “I’d never have guessed that you had that!”

Naturally, I was quite complimented by that. I learned that she knew a girl on her college course that has the same diagnosis, and the barmaid reflected on how ‘different’ she was. There was agreement when I said I had a “compulsive drive to socialise”. I was still quite pleased at her comments about not guessing I had AS, as it agrees with my views: that I can cope with socialising, going out, and so on…